a Established market economies.
b This category excludes cerebrovascular disease.
Disability‐adjusted life year is an indicator of the time lived with a disability and the time lost due to premature mortality. Reproduced with permission from the World Health Organization 1996b. The figures for Europe were separately calculated (Olesen and Leonardi 2003).
Ethical and personal issues are intertwined with cost‐effectiveness. Therapies that are neither cost‐effective from the epidemiological nor from point of view of society can help an individual – such as the belief in homeopathic therapy, or travel to a centre for healing. Societal and evidence‐based, clinical perspectives clash.
Social policy can greatly lessen the individual burden, for example by financial benefits and social support. It must be stressed that in the majority of countries, even those who pride themselves on wealth and power, there is either no or minimal support for those who are ill, either acutely or chronically.
Stigma
Disease burden includes psychological, social, employment and legislative aspects. Some are rational, for example driving restrictions in epilepsy or stroke.
Stigma and discrimination deserve mention:
enacted stigma – discrimination experience for example ‘does he (the man in the wheelchair) take sugar?’
felt stigma – discrimination fear
self‐stigma – shame/withdrawal – response to discrimination perceived.
Complex interactions construct a stigma theory – to explain potential dangers people represent, either to others or to themselves. Whilst many no longer believe in witchcraft, in life after death, in the power of prayer or of the devil, some still do, and there remains a view that someone with a condition such as epilepsy, mental sub‐normality or schizophrenia is in some way to blame.
Epilepsy is one example. To be regarded as epileptic can be more devastating than having an occasional blackout. Such beliefs are not restricted to poor societies. In Europe, with epilepsy, over 50% feel stigmatised. In the United States in some states until the 1950s, people with epilepsy were prohibited from marrying and could be sterilised; until the 1970s they could be excluded from restaurants and theatres.
Headache is another: people with headaches feel stigmatised at work. There is the well‐known male attitude to women with headaches and menstrual discomfort.
Doctors and health professional should be aware, not only of such prejudices, but also of their own attitudes.
Costs and Impact
Ill health imposes high costs, both on the patient and family everywhere. However, in poorer countries the proportion of family income spent on health is particularly high, not least as ill health results in unemployment.
In the United Kingdom, any chronic illness (over one year) is likely to diminish the income of a family by >50%.
Even in countries where health services are free at the point of delivery, the cost of all illness is substantial.
Neurological illnesses because of their chronic nature are particularly onerous. The impact of a disease depends upon personal wealth, the healthcare system and social networks available.
Treatment Gaps
Taking epilepsy again, a Treatment Gap is the percentage with seizures who do not receive anti‐epileptic drugs (AEDs). In Pakistan, the Philippines and Ecuador there are epilepsy TGs of 80–95%, in India around 75%, but <5% in the United Kingdom, pre‐COVID. Reasons include lack of health care, cost, drug availability, cultural factors, and stigma – and failure to grasp that AEDS are effective. Campaigns to narrow TGs are priorities.
Improvements
Improvements in health delivery rest largely with governments, their knowledge and resources. Non‐provision is largely due to policies. Success or failure to deliver provides stark contrasts, often unrelated to GDP. Most European countries have integrated care systems, that aim to improve the health of the populace. So does Cuba, despite its poverty. In the US, despite some of the world’s finest medical institutions such a system remains in its infancy. Quite where we are heading in the United Kingdom and in Europe, from 2021, is known to no one.
Acknowledgements
I am indebted to Professor Simon Shorvon who wrote the original chapter in Neurology A Queen Square Textbook Second Edition. Edited by Charles Clarke, Robin Howard, Martin Rossor &
